Colin and his gang.

We had a successful field trip to Carnes Arena with the 5th grade!  Of course, it took us longer than we predicted to get out of here but it was just as well because we had plenty of time to watch his classmates and FREEZE while we waited for Colin's turn on the ice.

I had never been to Carnes before but it's a really cool (pun intended) place.  The kids were all on the rink and skating away when we arrived.  I imagine it was chaos when they were all getting their skates on so I'm glad we avoided that part.

It was fun to watch the kids on the ice.  Some of the kids were evidently very comfortable skating and some were new at it and it was fun to see their antics.   Aunt Chris came to watch, too.

We went into the warm up room and readied ourselves for Colin's ice time.  At about 11:15 we made our way to the smaller rink and got Colin from his kart into the sled and settled onto the beanbag with his pillows and blankets.  Priscilla even brought a hot water bottle which she put under his legs and near his feet.  AHHHH!  A bunch of kids came to the rink to skate as well.  Initially, there were to be only a handful of kids but it ended up being a couple of handfuls :)   Mr Phillips and Mrs. TC were there as well.

So, Colin was very nervous, at first, but he bravely let us slide him onto the ice and Mrs. TC took off with him!  Nurse Lauren is a skater so she was out there on the ice watching over him and taking some pictures and video.  He went around a couple of times and said he was done, but we convinced him to go around a couple of more times.  Very proud of Colin for trying something new and something he was so unsure of!  He is a trooper!

Colin was supposed to be home by 2:00 to meet with Christina the PT from school to try out some different Hoyer slings but since it was still early Aunt Chris asked us to go out to Friendly's for lunch.  Sounded good to me!  We asked Priscilla, too.

Went to the Friendly's on Dorset Street.  Colin liked it!  He even said it was his favorite part of the day--weird kid.  I think he liked that Lauren kept him entertained with games and YouTube videos on her phone while we had our lunch and dessert. 

Made it home a little after 2:00...the weather started getting yucky--kind of icy/rainy.  Christina had a sling that was another kid's that we really liked.  She took the green one that we don't like (the one that is hard to get underneath Colin because of the stiffness and weird stays that it has.  If it works for the other child, we'll get to keep this one instead of the school having to order a new one.  Yay!

Casey stayed at home with Gene and Aunt Julia.  Mel came for a couple of hours and they did some school work and he was cooperative.

Skating away!

Mrs. TC and Collie

Me, Priscilla, Aunt Chris and Collie,

Another Angel

We lost another little one last night.  Chloe.  Beautiful and sweet little girl.  She was about 5-years-old and trached and vented like Casey. 

 I'm always saddened to hear of another angel passing but I don't always write about it here.  Many times we find out about a new angel from MJ and Brenda and Blankets 4 SMA.  They are usually the first to find out about newly diagnosed kids and thus usually the first to hear about new Heavenly angels.

I don't want this to become too sad of a blog.  Sometimes I get extra attached to a child and I was attached to Chloe.  I loved looking at her pictures--she was just so beautiful and sassy and her eyes sparkled!

So, instead of running out today and doing last minute shopping, I'll be staying here to be close to my Collie and 5-driving-minutes away from my Casey.  Sorry, Gene, you won't be getting the pack of underwear I was going to get today.  Sorry Aunt Chris, your stocking may be a little light this year.  I think you'll understand.

More treats made and Haddie plays Poptropica

Tiny bit of snow on the ground and flurries this morning.  BRRR cold, too.

After catching up on laundry and that kind of stuff, it was time to make my next endeavor of Peppermint Bark Rice Krispies.  Yes, you read it right.  I did it all in the microwave and it was easy, except for the drizzling part.  I am more of a clumper than a drizzler.


Boys finally stirred around 10:15!!  Casey was up before Colin.  Poor Colin must be going through a growth spurt or something but he's been falling asleep earlier than Casey (which is not heard of) and sleeping later.  They watched some Christmas videos including A Rolie Polie Christmas in memory of Lily. 

Casey's English 'report card'

So proud of my boy.  And, so glad to have a teacher that is committed to understanding our boy and wanting him to progress in his learning and communication. 

Casey

Well, I guess Nurse Julie, Mel (aide at school) and Casey were looking at this blog and thought that there were too many posts about Colin--well, how about not enough posts about Casey!

Casey has been working hard at his communication.  He's had his DynaVox for years.  (Actually, he's on his second one!)  He has most used phrases that we've put on for him.  We're truly not sure of what he can read and spell so it's tough trying to figure out the best way to help him communicate effectively. 

This year Mel has been working on getting him to put single words together to make a sentence.  No, it's not grammatically correct but it can make what he's trying to say more definitive.  The first time he put two words together it was pretty amazing. 

Tonight Casey is at a home basketball  game at the high school.  He went with Dada and Nurse Brooke.  I guess he really wanted me to go because he said, "mom-basket ball-game."  When  I explained to him he'd have more fun with Dada because he knows more about the game, he said, "my heart is in the gutter"  (That's a one-button phrase that we put on there).  I think he amazes himself sometimes about how he can say things and we respond.  He finally is 'getting' communication. 

On a different note, Casey is in 9th grade and many of his classrooms are upstairs.  When he was upstairs s at the elementary school they had an evacuation sled that they used for drills (never had to use it for real!)  But the way the stairs are at the high school the sled can't make it around the turns.  So, he's using the 'real' evacuation chair.  I really didn't think it would work for him but I guess it does!  Julie sent me these pictures from a practice they had. 

Isn't he so handsome!

I think he looks pretty good in the chair!

Hanging out in the evac chair.

So there are some Casey stories!

SMC party, no tree

Well, today was kind of a sad day.  Casey did not want to go to the annual St. Michael's holiday party.  I guess now that he's 14, almost 15, he doesn't think he needs to go see Santa anymore.  Colin is still kind of into it at 10, so Gene and Colin headed out while I stayed here with Casey and Aunt Ju.

I was in a crappy mood anyway since I started with a dang cold sore and I was tired from being nurse for the boys last night.  Colin slept pretty well.  I guess he was tired out from being so naughty at school all week.  He even fell asleep before Casey and I can't even remember the last time that happened!  I had Star 92.9 Christmas music on for Casey so that may be why he stayed up.  But, his vent was acting weird, which was bugging both of us.  I had hearing it, click, click, way too fast.  I tried checking all the connections, checking his trach ties, moving his head/chin, giving him big breaths, but nothing seemed to work.  He finally got intto a nice, slow, even pattern after 3:30 or so.

Somewhere around that time, Gene was awake as well.  I said that I was hungy and asked him to bring me a bowl of cereal.  He did.  :)

Around 7:30 AM or so I headed up to bed for a while.  We all slept in until 10:00!

Sausage frittata a'la Gene this morning.  Then it was getting the boys ready for the day.  Colin got a shower and got duded up in handsome clothes (sweater and pants used to be Casey's!).  Sent Gene and Colin off to the party.   AC came and kept Casey happy.  Julia and I did some catching up around here:  laundry, beds, formula, supplies put away, living room pick up, etc. 

Apparently, Colin was not too into the party.  He closed his eyes for just about everything.  He liked his face painting.  And, he did keep his eyes open for pictures by the tree.  He didn't even want to see Santa!  He kept saying, "Mama, Aunt Ju."  I guess he thought something more fun was going on at home!   He wasn't mad or grumpy, just quiet.  Gene said he almost ran off the road because he couldn't hear Colin at all.  When Casey rides--everyone knows that he's there!

Gene took a ride this evening through Milton but didn't get a tree.  Sigh.  So today was a weird day for me.  Cold sore, no St. Mike's party and no putting up the tree after the party.  Bummer.

Colin and his festive tree.

The St. Mike's Tree

Dada and kid.  A woman volunteered to take some pics and after this one the camera died.

Colin tales

Colin has been quite a handful lately, especially at school :)  This is his behavior chart for today.  At least he got 2 runs in the afternoon and NO outs!

 

Last night Gene suctioned Colin's mouth and said he got some yucky yellow. I asked Colin if he was too sick for TV school tomorrow (he's NOT sick at all!) and he said "uh huh, uh huh, uh huh!" I said, "Well, then you'll have to go to the doctor (that didn't phase him since he doesn't mind) and you'll have to take lots of medicine." That got a "NO! NO!" He hates taking medicine...and yes, it would be through his g-tube so I have no clue why. Then, I said, "You'll just have to stay in bed and not watch any movies or play any wii so you can get better." He didn't like that too much and when I asked him again he said he was fine and he'd be okay going to TV school tomorrow!

Colin, Lauren and I have pulled out the Christmas board games.  How many kids do you know that have 3 Christmas board games????????   The other day we played Charlie Brown Christmas (I WON and I got to light up the Charlie Brown tree!)  Yesterday, Colin, Lauren and Aunt Chris played The Polar Exrpress.  Colin won that one.  He was being very funny/odd and kept saying that he saw something scary over by his bed.  I tried to convince him that only nice ghosts, like Casper, come to nice boys' houses.  Or that maybe he saw an elf that was spying on him to see if he was naughty or nice????  Don't think I convinced him.  He watches too many scary shows!

Here are a couple of random pics. 

Just my handsome dude engrossed in a movie.

Playing a vintage Scooby Doo game with Nurse Lauren.

He wants to WIN!

Helping Nurse Lauren play a game on his DynaVox.

It's the little things that count?

That's what they say, right?  It's the little things that count?  Well, I was going to tell you about my 'little thing' that I did yesterday.  After several years of putting it off, I decided that it was the day to consolidate and update my address book.  You know, the ones that are like a loose leaf notebook and you write in??  Does anyone but me even have those anymore??  I set the timer on my stove for 15 minutes (are you familiar with flylady.net?).  I went to work.  I made my way from A through E before the timer went off.  There.  I was pleased with myself.   It's the little things, right?

This morning I woke up and checked out Facebook to discover that one of my favorite little boys with SMA became an angel yesterday.  It's the little things?  I think not. Ironically, Aiden was nick-named Biggie.  Sure, maybe he was big for his age, but he had a big smile and a big personality as well.  He's gone.  That's not a little thing; that's a big thing.  It's the big things that count. 

You will be forever remembered, Biggie.

Video of Colin using new micro switch

We are all so glad that Gene (Dada) is home!  He was only gone for one night but he was sorely missed (is that what I meant to say?)  The biggest pain in my butt was Jaxon.  Oh, how he missed his master!  He's a good sleeper at night but during the day he is a clingy terror.  He followed me around and got under every step I took.  We went outside 14 times today!  He loves to play, play, play.  He gets pretty rowdy and naughty.  Then he goes inside and drinks tons of water since he's parched from playing and then, of course, he has to pee, so the cycle continues.

Claire was here to create a splint for Colin's new micro switch.  I think it's going to work well.  I have some video of him using it but my Flipshare software had some error on it.  I hope it's not screwed up completely.

Gene finally made it home around 5 something.  He had stopped at Price Chopper to pick up some dinner.  AC stayed home but Mom and Dad came over.  Gene made some nice steaks on the grill (and he didn't over cook them) and some panko breaded broiled haddock.  We had rice pilaf, green beans, seeded Italian bread and raw carrots for mom.  Cupcakes that I made last night for dessert and/or apple pie.

Casey wanted to sit with us a dinner tonight.  That's very unusual.  He used to enjoy it but then he went through a phase when he didn't want to and no matter what we did he would yell.  We asked him tonight and he said "yes" and was good as gold!  He used his DynaVox (mostly) appropriately....well, he did tell Grandpa to "shut up" but it was done in jest.  He thought it was funny when he kept telling us to turn out the light.  Gene kept on making up stories what would happen if he kept the light off--Grandpa would bite off his lip and we'd have to put a bandaid on it, or Grandma would eat Jaxon by mistake.  He loved it!  I was very proud of my boy!

Casey had a good day at school.  He was a little better than 'medium' good.  He had a few breaks but also earned some free time.

Colin had a pretty good day, too.  I think he lost it a little bit when Cheryl came to shadow Priscilla, but I heard him doing some good listening and some participating.

It sounds like Gene and Dad had a good time on their adventure.  They had a nice dinner in Newport and watched the Red Sox/Yankee game until almost midnight (I was home watching here!).  Red Sox finally won in the 14th inning, whew, we needed that!  They were up early and hit the pond/lake and fished and floated and enjoyed the beautiful day.  Gene even took his shirt off and got burned.  Dad caught more fish than Gene, as usual, but no keepers.  They enjoyed the lunch I packed.  I'm glad that they got to do that again.  I know they both looked forward to it each summer.

Colin is sound asleep.  Gene read the book that he's reading with Casey to both of them tonight since Mom and Dad were here late and then didn't get alone time.  It must have bored Colin to sleep!  But, he also does have a little temp going on.  When I got him in bed I noticed his arms were freezing but his body was very warm.  He also looked a little glassy-eyed.  When I took his temp he was 99.9 axillary.   Tylenol given.  Hoping he sleeps well tonight. 

Heartwarming story:  Another must read/watch.  I promise it won't disappoint.



http://alittlemageinthefamily.blogspot.com/2011/09/ive-got-van.html

Wasted day :(

Well, it was a wasted day for me. Gene worked from home (luckily for me), Casey had a thumbs up day at school, and Colin got a couple of runs (although the TV wasn't working for much of the day) and even the dog and cats were content. Me, I had a migraine. I had some little niggling headaches throughout the weekend that I was able to stave off with 600mg of ibuprofen, but today it hit hard. I was having some weird flashes of dark and light and I was nauseous. So, after Casey got off to school and Colin had his neb and meds and Lauren came, I hit the bed with my icepack. I know I drifted off pretty quickly and slept hard for a while.

I came to this afternoon and ventured downstairs for a while and ate some fritata that Gene had made. Oh, and somewhere in there I made a fruity, icy smoothie. Cold always does my head and stomach good.

Aunt Chris came with DVDs for the boys. A new Scooby Doo movie came out on yesterday and AC was right there to get it for her Colin! She found a Super Bowl DVD for Casey so he was very happy, too.

Nurse Julie came over with some yummy food; ham, scalloped potatoes, baked beans, mixed veggies and carrot cake. Delicious!

I hope I can sleep tonight! Casey and Julie are in the shower. Colin is watching a movie in the wish room. He decided that he wanted to stay out there this afternoon/evening. Gene went out for a bit and left me with the stinky cheese dog. He really smells like cheese! Darn rain!

Making progress on Colin's new chair and a fun package

Casey was off today in a good mood. He ended up doing okay. He had some time outs in the hallway but he spent some time in class, phew! Things are still new and I know he likes to have things more concrete and settled than they are right now, but Mel is working hard to nail down his schedule and routine!

Colin, well, he had a stinky morning. Lots of complaining and not listening very well. He got lots of strikes and outs. I'll have to go and count). He made 10 cents for one good listening period.

Colin did better this afternoon and made a quarter :) The TV had some issues. I guess the drops in his other classrooms (his homeroom/main class is fine) aren't working.

Spent 2 and a half hours with the "chair" people. Missy, (The Medical Store), Paul (seating for Children with Special Health Needs) and our rep from Invacare were here. THANK YOU SO MUCH, Nikki, Heather and Sandy for sharing pics of your kids in the Solara/Spree chairs and paving the way to getting Colin a wheelchair that he can be comfortable in and meet his needs! It's so nice not to have to start totally from scratch! I had pictures of 4 kids that Missy printed out so that we could see what parts/accessories/modifications that they made so that the kids can lay flatter (like our Easy S medical stroller) and have room for equipment and to have a functional push handle, etc. The rep was very impressed and excited to see what others have done.

Jaxon was a super pain in the butt while we were trying to get this all done. Luckily, all three of the "chair" people like dogs so they dealt okay with him hopping all over us and 'snuffling' their hair and bringing them his toys and barking when I finally put him in his crate, sigh. Julia even tried to bring him out but he was so hyper and wild that she couldn't get him to stop gnawing on the leash!

Today we received our package from Busy Bee Sewing for SMA (Peggy McBee). Peggy makes some beautifully sewn things and profits go to SMA research. I ordered 3 covers for oxygen tanks; 2 'E' tanks and an 'M' tank. They look great! I wanted something for older boys and since we're re-doing Casey's room in flames, I asked if she could use flame material...Here's Casey with a pillow case that she added to our order!

And, here's one of the oxygen tank covers.

Check her out on Facebook...BusyBee Sewing for SMA or on Etsy

"100% of the proceeds from this shop will be donated to Sophia's Cure Foundation (http://www.sophiascure.org/) to help fund Gene Therapy Research for SMA."

Waiting for the S family and going to Lady A

Well, we're WAITing for Connie, Justin and Daniel to arrive. There's really no rush, except that we're anxious to see them ;-) They are going to sleep in our living room--should be fun!

Casey has decided that he does NOT want to go to the concert. Colin really wants to go so we're going to take him instead. It's funny because Casey has always been the music lover and adventurer. But, he's been overly vocal at the last several events we've been to--the movies and Big Time Rush concert. He hasn't seemed like he's enjoyed himself so he's telling us he doesn't want to go and we're going to honor that (instead of what we'd usually do and make him go anyway since we're thinking that he really DOES want to go....but maybe we're wrong).

Still waiting!

Full day #2

Both boys did a little better in school today. Casey spent some time in class although he did need some time out but earned some free time, too. He chose to walk through the halls for his free time. He loves exploring new places! Colin seems eager to start his new behavior plan. This year he wants to do a baseball themed plan. He'll earn runs and outs for positive and negative behaviors. Positive behaviors: listening quietly, participating, using his DynaVox to express his feelings. Negative behaviors: closing his eyes, 'yelling', not participating, not using his DynaVox to express his feelings/needs (whining). He'll earn dimes and quarters for runs that he makes. When he strikes out in the morning he looses picking his activity for break time. In the afternoon, if he strikes out, he will not get to play Wii or computer or watch movies and he has to finish any school work/projects before watching TV. (I just can't see taking TV away from him totally because it would be a punishment on us adults!

Full day #1 and hair cut

Well, I had a good day; can't say the same for the boys. Casey had a very loud day at school. Mel said that she couldn't really blame him since everything was brand new and very disjointed.

Colin had some good parts, and not so good parts, of his day. He closed his eyes quite a bit and did lots of 'owing'.

I met AC at her house and we went to The Hair Studio. She had her eyebrows done by Kathy and I had my hair cut by Margie. Ahhhh! She cut it in layers and shortened it up a bit and was excited about my 'natural wave'. I never thought of myself as having wavy hair but in my old age it seems to have become somewhat wavy. We'll see how it looks after I wash it and brush it out tomorrow!

Then we went to Chef's Corners. Delicious chicken salad sandwich on homemade wheat bread, side salad and iced tea. We got dessert to go. I picked a triple nut bar---so sweet and nutty and very scrumptious!

I was feeling badly for not buying any new clothes for Casey's start of 9th grade so AC and I went over to Old Navy. I found a pair of black jeans but that's about it. They had way more girls and womens' clothing than boys. I had a $10 gift card so the jeans were $5.

Still had some time left so we hit Kohls. Hit the jackpot there. Found Casey some tan jean-like pants and some gray parachute kind of pants. I also found 2 long sleeved shirts and a maroon short sleeved one. I used my gift card and 15% coupon and got a great deal.

Headed home after that. Oh, wait, I got to see AC's new paint job in her living room. She had 3 walls painted a pretty blue. I helped her put back some of the switch plates and move the china cabinet back into place.

The day after Irene

Brought the dog out for his morning pee. Lots of limbs and branches are littering our yard. The pool is fine and the house is fine.

Now to deal with the power issue. Have to figure out where to start. Sigh.


11:20 AM: WE HAVE POWER!!!

Hurricane Irene report

8:00 AM: been raining here for a couple of hours. Air is still, but yellowy and feeling heavy. Boys are sleeping.

10:15: Rain coming straight down. No wind yet. Dark. Boys just barely woke up. I had to turn on a light!

10:45 AM: Wind picking up. Rain is coming down on an angle now.

11:30 AM: Weather the same here. Southern Vermont is reporting lots of flooding and washed out roads.
Boys are happy watching The Country Bears. Jaxon is not happy because no one (not even him!) wants to go out and play (but he still has all his energy) and he's loping around the house with his Frisbee trying to get someone to play with him.

Flash flood warning just issued for Burlington area. 6600 CVPS customers (our electric) are without power.

1:00 PM: Wind is picking up. Some big gusts. Gene's umbrella went inside out when he went out with Jaxon.

Boys are in the living room. Colin is watching cartoons and Casey is listening to his book on CD. I'm heading up for a rest with Moxie. Gene is going to make a special concoction, I hope!

About 7:00 PM: The wind is supposedly going to pick up and we're going to get 1 to 3 or more inches. We have a gas generator but not a whole house one. We're putting it on for short periods but running the boy's equipment mostly on batteries. We'll be fine unless a tree falls on the house!

8:00 PM (give or take) Not happy. Been 2 hours and the guys haven't been back to trim trees and fix transformer. Gene called and they have no idea what the crew is doing. Advised us to seek alternative arrangements. Now what?

8:10 PM We are on "the list" so I don't know what happened but they will be hearing from me! Just spoke with milton police. They are with a cvps crew and will send a crew over. Fingers crossed!


8:40 PM The house smells like wet dog...DVD battery finally died--I think it ran for about 3 movies--pretty good! Now we're watching TV. Nurse Staci is going to bring me a milk shake if she can make it in. I think the worst is over but Gene still wants the boys to sleep in the living room. Apparently, I don't rate because he's letting me sleep upstairs, but won't let the boys sleep in the wish room!

some things and a must read post

Not much exciting here going on today so I want to share a link to a post that a friend wrote about her child. He has SMA like Casey and Colin. It truly is a must read!!

Oh, I stopped by the Milton Public Library today for the FIRST time since it was renovated. Wow, nicely done! I picked up two books on CD for Casey; City of Embers and one by Carl Hiasen, and a dog training book for myself.

Jaxon and I had a little training today. I made him sit before we went out which he does fine. Once outside he starts jumping and gnawing on my arm. Have to study up on walking on a leash, sigh. We played some good catch. I'd throw the ball or the new Frisbee and say "bring it!" He get it and bring it back. I'd say "drop it" and show him a piece of kibble and much of the time he'd drop it. I'd have to snatch the Frisbee up pretty quickly and throw it or else he'd grab at it. Little baby steps today.

The boys had a low-key day. Poptropica, some Scooby Doo on-line games and then some wii.

I must also mention Hurricane Irene. So scared for so many of our SMA friends that are in the path of this storm. I know some will be evacuating and I pray for everyone's safety. On a less urgent note, our concert may be canceled due to the storm. What a bummer that would be, but better safe than sorry, especially after the disaster at the Indiana State Fair with Sugarland tragedy.

So here is the post:

Today...
by Kathleen Weber Piazza on Thursday, August 25, 2011 at 8:04pm

August 25, 2011

As I sit and write this entry, there are a few things I need to say immediately:

- Today...is Nicholas' 1st day of college!

- Today...is proof that DREAMS do come true!

- Today...is a MIRACLE in the works!

- Today...is the hardest, scariest, most anxiety ridden day that I have known in a long time!

My heart feels like it is going to beat right out of my body...doesn't anyone around me see it?...can't you hear it?!

Sending your child to college is an emotional time in any parents life. Imagine sending your medically fragile, wheelchair bound, totally dependant child who "they" all said would be "dead before the age of 2" ("they" being the doctors who 1st diagnosed him, I believe it was a "world renown" dr)...Imagine the stress I am going through - I really don't think you can...unless you are a parent of a child with SMA. We SMA parents are a unique breed...we never asked to join this club, yet we are dedicated to it 100%. We can create, build, adapt ANYTHING so that our special child can have the most normal life experience ever!

As I sit here in SUNY New Paltz, Wooster Science Building (we actually found a great little lounge area complete with a huge ROCK coffee table...GEOLOGY is what Nicks' major is and he currently is in a geology lab class)..Oh sorry, I kind of went off track...as I sit here in this science building, I am overhelmed by the fact that my son is EXACTLY where he wants to be...he is living his DREAM! AMAZING!! I can barely write as the tears flood my eyes and stream down my face. I could never have imagined when we were first diagnosed 17 years ago that this is where we would be today!

I'm trying to blend into the walls so that Nick feels his accomplishment without me hovering, but let me tell you...it is VERY difficult! I have always been the one caring for him, sensing what he needs I think sometimes before he even does. Now he is a young man, "walking" through the halls of college...WOW! I thank his nurse for attending with him, I know he is in good hands...but still I worry, wait, I pray. As an SMA parent i think we worry more than any other parent on this planet! It sometimes becomes unbearable, all the worrying, a feeling like nothing is possible. But TODAY...EVERYTHING IS POSSIBLE! TODAY...IS A GREAT DAY!

1st day of Kindergarten!

1st day of College!

The pictures didn't post :( but it's a powerful message.

Rango-boy, Earthquake

Wanted to post a pic of my Rango-boy. He is definitely into it. Today Nurse Lauren duded him up and they went outside to check the neighborhood (back yard) for bad guys. Apparently, the pool and the grill were very bad because they got shot with lots of nerf bullets!

OH, and no one in this house felt the earthquake that we centered north of Richmond, VA. It was the largest earthquake the east coast has seen in 100 years! Many people felt it in Vermont, and specifically, Milton, but no one here felt a thing! I must have been napping with Moxie...maybe that's what woke me up. The boys were outside and Julia was around here somewhere...

BUT, this morning, we all SWORE that there was a huge explosion or earthquake. Gene figured that they were blasting in the quarry again. It's recently re-opened. We all looked at each other like "is this the end of the world?" Weird, because we didn't feel the actual earthquake.

Here's Casey today. He was hanging in his room listening to a book on CD and gazing out the window.

This morning the guy came from the chair place to tune up the boys' chairs. I had envisioned something a little different than he did. I remember our old place they would pick up the chairs, bring them to the shop and check them over completely. When I made the appointment I had a feeling that it wasn't going to be thorough. All he did was ask us a few questions and then suggest some new tires. I said, well, can you check the breaks and the frame solidness and things like that?? He said that the chairs looked great and the power chair wasn't making any noises so it was good. Sigh. We did point out that Casey's manual chair needs new tilt cables so we're getting those, too. Ooooh, and he noticed that we're missing a few caps over some of the bolts on Casey's power chair so he'll get those covered. Ha! Wanna bet that never happens!?

Exciting things!

Two exciting things happened today, but I'm only going to tell you about one of them ;-)

I'd been pondering getting tickets for the boys to see Big Time Rush at the Champlain Valley Fair. Casey and I are already going to see Lady Antebellum with MJ, Brenda and Connie....but I really didn't want to miss, I mean for the boys to miss, such a cool show. I asked Gene if he thought we should go and he was okay with it. $170 later, we're going!! It will be Aunt Chris, me and the boys. Gene will go with us and walk around the fair while we're in the show. We did that with the Jonas Bros. and that worked out fine. I wasn't going to tell Casey yet but I forgot to tell Aunt Chris not to say anything, ooops. So, when Casey used his DynaVox to say, "When is the next good music concert?" Instead of saying Lady Antebellum she said Sunday and Big Time Rush! I think he's excited. Colin said, "YAY"!!!!

Casey spent some time out on the swing with Julie today. Not sure what they did but he probably listened to music. It was a beautifully cool and breezy day--more like fall.

Colin and Nana L played some old-time computer games-Monster's Inc and some Putt-putt. We haven't played those in a couple of years! For some reason Colin is obsessed with Randall from Monster's Inc. He's also Obsessed with Rango right now. Gene found him an Australian outback hat that he got from someone and I cleaned it up and he loves wearing it. Aunt Chris found him a glittery, blue star (perfect for him since it was his beloved BLUE) but Jackson got a hold of it and pretty much chewed it up. I took a Big Change Roundup for Kids badge (raises money for our children's hospital) and covered it with aluminum foil and Colin is happy again.

I never got to take my read/nap today but got a chance to have a good catchup with a facebook friend from Canada.

I'm actually reading a book again. Dad gave me Smokin' Seventeen for my birthday and I'm really enjoying it. It's definitely a laugh out loud book! It even comes with stickers in the back "I <3 Ranger" or "I <3 Morelli" I'm looking forward to sporting "I <3 Ranger". How about you?????

Busy day already and it's only 10:30!

I had the boys last night. Casey was perfect! Colin was extremely 'flippy' as he needed to flip about every half an hour. Ugh. Gene slept on the couch, as usual, but we brought Jaxon's crate downstairs and put it near Gene with a blanket over it so that the cats could feel like they could roam and not be skittish around Jaxon. Jaxon slept like a log and Moxie felt like she could walk by him and come in and torment me like usual.

So, last night Gene asked when the dentist appointments were for the boys so that he could block off his calendar. I thought they were at 2:15 or so. When I flipped my calendar I saw that they were at 9:00 AM!!

Oh, my! That changed everything! My counselor appointment was scheduled at the same time-what was I thinking???

So, I called my counselor and asked if I could bring Jaxon. She said she thought it would be fine but she'd clear it with the owners...

This morning I got up right before 7:00 and started the day. Nancy H came for Casey. Woke the boys, started nebs and getting food and their chairs ready, etc. Took a shower, had one cup of coffee and some cereal. Got Colin's clothes out, bucket of water ready, etc. Nancy L came and finished him up.

Jaxon and I were out of the house at 8:30 and Gene and the nurses and boys were right behind me!

M.E. loved Jaxon. Thre was another dog there and it kind of startled him and he huffed but the rest of the time he was perfect.

Owww!

Jaxon and I dashed outside to, um, pee and play some ball before the storm came in. We did our pee and were playing with the ball when, CRACK!, the thunder started! He seemed okay with the thunder and then an even huger one came and I think we both jumped 10 feet in the air! We grabbed the ball and I put the leash back on and started bolting for the house because torrential rain started. We were rounding the corner and I slipped (I was wearing my crocs!) I think Jax pulled me 5 feet before he realized I was down. Ouch! My whole left side, especially my shoulder and knee are already sore and achy and killing me!

Back!

I hate that I always stop blogging when we have so much fun stuff going on. I'd like to have it all down on paper (computer :-) ) but we were so busy I just couldn't get myself to write (although I did find time to play Frontierville!)

I'll start from today.

Casey was a crabby dude. He only wanted to do what he wanted (and I don't blame him but he should be able to deal with it since he IS 14 after all).

Anyway, my rule this summer is that the boys have to do something every day that they don't 'normally' do, except on summer school days, as summer school will 'count'.

Today, painting was on the agenda.

Scooby Doo is in the dog house :(

For the first time since Priscilla implemented the Scooby Doo behavior plan--Colin lost his 4 Scooby Doo snacks and Scooby was sent to his dog house. Colin would not stop obsessing about Megamind. He was watching it (for the first time since he saw it in the theater) this morning and wanted to finish it so badly that he couldn't stop saying, "Megamind, Megamind, Megamind." So, he lost his snacks one by one. This means no gaming this afternoon! This could be rough for ALL of us!

Torential rains!

Poor Casey had to get all decked out in a rain poncho this morning. We had heavy rains and some thunder and lightening. I made Gene get up to help Casey and Julie get to the bus. I think that was a good thing all around because he ended up getting out of the house and to the office earlier than normal.

Happy Belated Birthday to G'ma O

I was bored this morning. All the boys slept in, including Nugget!

Beautiful morning. Warmish and nice.

Casey took a tubby and chose to lollygag so he didn't get to spend time outside. Gene and I took Colin outside and he helped put up the house numbers on the side of the house facing the road. Enjoyed the sunshine (although it was a bit breezy) and then Dada and Colin walked to the pond.

I made a cake for Grandma's belated birthday. Yummy yellow buttery cake with vanilla frosting in the middle and chocolate on the outside.

Grandma and Grandpa came over while I was napping (I was kind of grumpy and thought I was getting a cold).

Gene made a chicken and veggie stir fry and we had rice and a 'lovely' beet salad he concocted.

Here's Grandma putting out her candles!!

School on Saturday

This morning I had to wake the beasts earlier than on a normal Saturday morning. We wanted to head out to school by 10:30 or so to participate in the 8th Grade Boston fundraiser.

Nancy came at 9:00 and I at least had the boys slightly awake. Watched The Lorax (for the 20th time for Colin) while we got ready.

Beautiful day out. Perfect day for the fundraiser. We made it to school in plenty of time to browse around the tag sale and catch the firetruck pull. I'm not sure how many teams there were but they were made up of school kids, teachers, community members, firemen, etc. They had prizes for the teams that made the most money and who pulled the fastest.

We played a couple of games--hole in one golf, and ring toss. We ate hot dogs and cup cakes. Chatted and walked around. I think they made a pretty good amount of money, but it's hard to say.

We didn't win the 50/50 raffle but the woman who did donated $500 back to the class! Oh, and there was also a car wash going on.

We should have stayed to watch the teachers get pies in the faces but we would have had to hang out for another half an hour and the boys were getting restless. I hope someone got some good pictures!

Settled into the living room and Nancy played Toys Story 3 PC game with the boys. I tried to nap but didn't succeed.

Priscilla stopped by with Nicky, one of the 'kids' that I used to work with way back when I was a para in Milton. She brought her talk typer that she uses which was cool. She talks but isn't always understandable unless you know her well. She looks good! They just stayed for a few minutes but it was good to see her!

AC came over. She brought me a Dunkin Donuts iced-coffee. I CANNOT get used to this! One, it's not good for me (too many calories and I don't need the extra caffeine), and it's expensive....so I'm going to try to be good this spring/summer!

Trilogy

Colin is sleeping away on his new vent/bipap/Trilogy.

Colin gets his Trilogy!

All-in-all everything went better and easier than I expected. This morning I thought the whole day was going to be a bomb because the hospital called and said they didn't have a bed ready for Colin so not to come in as planned...Some waiting and lots of phone calls later, we got the okay to head in--luckily we are only about 15 minutes or so from our hospital.

Took forever in Registration. Funny thing. While we were waiting in Registration a woman started talking to us...turns out she figured out who we were because she is friends with our old nurse, Darla...and she must have seen pictures of the boys...so while I was up at the desk the woman took her phone out and called Darla so Gene got to chat with her. We're "mad" at her because last time she was in Vermont she didn't come by :(

So, we head upstairs and roll into the PICU. I think we're the only family that ever admits and discharges from the PICU!

Paul (RT) was there. Not much happened, at first. Got settled in. No one really 'got' that we were just there for a couple of hours--guess it's not done much. We were admitted on an 'in patient' level of care, whatever that means. The nurse wanted all this info about meds and all that and I ended up giving her his schedule but it wasn't needed. We already had permission from Nutrition to use our feeds.

Saw Dr. Heath (Intensivist) and caught him up on things. Saw Dr. Lahiri (pulmonologist), etc.

Casey goes to the bowling alley but doesn't bowl, nutrition update for the boys

Casey went to the bowling alley today with the high schoolers. Testing going on so he was able to get out with the crew and not miss any core subjects. But, what does he choose to do? He decides to play arcade games when everyone else bowled. Oh well.

Colin had a pretty good school day. He was kind of owing a lot in his stander but looked good. Lauren gave him 3 movies for his birthday, one of which is the Lorax. He watched it during break and was sooo funny! He was very emotional about the trees getting chopped down; so cute! He was quite a pill when Emily came at the end of the day--he closed his eyes as soon as he heard the front door open. She said she's going to have to bring something really fun next time to get him out of this new 'habit.'

Me, what did I do today? Not too much. Laundry. Paperwork. Phone calls. Oh, speaking of phone calls, Nancy L talked to someone at the Board of Nursing for NY State about Julie and Nancy doing some time with the boys during camp. She said it was fine. I hope I get this right-as long as they are taking care of Vermont kids there's no problem. I forget the wording, but I'll ask Nancy and write it down. I hope it's true. Long story, but last year was the first year we brought any nurses to Camp Inspiration and we were not able to have them as 'real' nurses because of what we understood the laws to be, so I am kind of confused but happy. We thought they'd have to apply, and pay for, a temporary license in NY and by the time we realized this is was too late since it can take months for the process. I'm going to check in with Nurse Emo at camp and tell her what we've heard and see what she says...

Linda L was here this afternoon and we worked on the boys' diets. Both boys will be going up tiny bits in their calorie, and protein intake--like 5%. I like to do things slowly! I won't make the new changes until she writes everything up and sends her report. The boys are due for new labs so things may change again..

Casey is about 60 1/2 pounds, 60" in height (1/23/97)
Colin is about 45 1/2 pounds, 50" in height (4/4/01)

Both boys have been on their own curve (off of the 'average' child chart) since they were very young. We keep their calorie/nutrition needs on THEIR curve and they have thrived. We've been lucky that the docs and nutritionists have let us take the lead on this. There are many families that have to fight to use the guidelines that have been determined to be beneficial to SMA kids and this is one fight I don't have to partake in. Yay!

Colin is 10!

Yes, my youngest is now in double digits! Both Gene and I can't believe that so much time has passed! In so many ways it has flown by! I still think of Colin as a little guy and he's not--he's a tween now I suppose!

I made Colin's cake in the morning. I usually don't give them choices as to what kind of cake to make but I asked Colin and he had a firm opinion--yellow cake with chocolate frosting--weird because neither of the boys is much of a taster but he said that's what he wanted so that's what he got! I had given Gene a list of what to get and when he went to Price Chopper some of the cake mixes were on sale. He found a yellow one and brought them up to see if they were on sale, but this one wasn't and it was the only yellow mix they had. Luckily for him, he did the right thing and bought it! He knew there would be hell to pay if he brought home anything different than a yellow cake mix and chocolate frosting!

Colin's class had a bit of a different schedule today which worked out in his favor. He doesn't usually get to see them at snack time but today he was able to be on TV school for it so they sang Happy Birthday to him, ate his cupcakes and Scooby Fruit Snacks and showed off their Scooby Doo rubber bracelets. And, the class also sang Happy Birthday during their music class!

Casey had a pretty good day at school.

I ended up making dinner and complained the whole time. I just don't like it. I know I should do it more often but it's hard because the boys are needy that time of day and I have to go back and forth a lot and I get stressed out. But, I managed to make shake and bake pork chops, mashed potatoes and mixed veggies. Doesn't sound like a big deal, but with the phone ringing and Colin owing and Casey yelling and my hands full of breading...well, you get the picture.

While I was cooking, Aunt Chris gave Colin his 'expected' present; Rango Wii. The minute the movie ended yesterday he said "Aunt Wii Rango." She pretty much told him that he would be getting it for his birthday. So, Julie played with them for a while and they had a grand time. It looks like it's going to be a good one.

Gene brought home a balloon bouquet with lots of blue balloons and a helium with Batman on one side and the Joker on the other. He thought it was cool.

After dinner Colin got to make his wish and put out his candles. We've traditionally used a candle snuffer to put out candles since the boys can't blow very hard. The cake was good and Colin tried his chocolate frosting.

Presents came next. I think he was a little overwhelmed. He is the type of kid that gets something and wants to play with it, not one of the kids that wants to rip open more and more and toss them aside to get more and more!

Colin seemed to really like the Small Soldiers figures that I got off of ebay (they were Burger King toys from 1987, I believe). They're perfect sizes for him and he thinks they're cool. He probably thinks I spent a lot of money on them, too, because I told him that he wasn't going to get any because most of the stuff I originally looked at on ebay were hundreds of dollars! He also likes the Scooby Doo TY beanie baby that we gave him. AC also gave him a TMNT wii game, and the Megamind DVD. He got lots of money, too, which he says he wants to use to buy wii games. We opened a few more things but decided to stop because he was getting that glazed over look in his eyes.

Then it was bedtime and the birthday was over! Well, not really because there are more gifts and cards still to open!



Click on the picture to view a slideshow of Colin's big day!

Rango and busy week ahead

Everyone enjoyed Rango! Colin wavered between Rango and HOP but finally decided on Rango. I'm glad he did. Dada even went with us today and I really think that he liked it--not sure if he would have enjoyed hop as much.

We all slept in. Of course, I was the first one up as usual. Julie came at 10:00 and helped us get everyone ready. Gene gave Colin a shower...right into his chair and out the door we went! We made it to the theater and our seats while the last trailer was playing. There were only a handful of families in the theater beside us. Casey was so cooperative! He only had two short "yells" but nothing outrageous. He laughed and giggled a lot. I think he liked having his Dada there. Colin was his usual happy self, laughing and talking to the movie and getting excited and expressing his feelings of being worried, or jubilant, according to whatever was going on in the plot. He's so cute!

Played a couple of games afterward, but nothing too thrilling. We used my swag card to buy the tickets and concessions so next time we'll have a free ticket! We spend enough at this theater so it's nice to get something back.

What a pretty day out! It always seems like we choose the pretty days to go to the movies, oh well! It was sunny but breezy and spring fresh.

We stopped at Main Street to see Grandma and Grandpa O. They came out to the van to visit and I went up and got Julia and Roxy, AKA PigDog. She was so excited to see me! She even chose me over Gene!!

Settled the boys in the living room. Kid's Choice Awards on. Colin protested, at first, but then got into them.

We have a busy week this week. Of course, tomorrow is the BIG 10 for Colin! We'll have our normal family celebration in the evening with cake and presents. Tuesday after school we have the nutritionist coming. Wednesday after school our RT, Paul, is bringing over the Trilogy and showing a couple of the nurses some of the basics. Thursday is THE day we go to the PICU for the day for Colin to try out the Trilogy. I'm not too thrilled about being admitted for the day but there's mostly likely no reason we will have to stay overnight. It will be good to have Dr. Heath (Intensivist), Dr. Lahiri (pulm), our RT, Rich from Respironics and some of the RTs we know from the hospital around. No one (well, except Rich!) has used this unit so it's important to me to have other people know it in case we have issues or need something...Colin will not be happy but we will keep him distracted with movies. He's getting so much better about new situations that I know he will do fine.

Oh, and I will be calling the PICU tomorrow to see how the RSV is. A couple of weeks ago it was very quiet and I hope that's still the case. I was hoping to bring Colin to school this week to celebrate his birthday and visit the book fair but so many of the kids in his class, and the kids at the elementary school in general, have been sick with various illnesses.

Friday will be just a normal day, whew!

Saturday is the big fundraiser for the 8th grade Boston trip. There is going to be a fire truck pull, carnival, food, tag sale, music, etc. Should be fun.

Apnea Link

I wore an Apnea Link last night. Our RT had told us about it one time when we were talking about C-Paps and sleep studies. I snore. Yes, I am publicly admitting that I am a snorer; a loud snorer. I like to sleep on my back because then I have two ears open to hear the baby monitor so I can hear what's up with the boys. If I'm on my side, one of my ears is covered so what I hear isn't as clear. I know it's weird, but I've been doing it for years and years and years. I don't think that I have periods of apnea, but I do think my snoring interferes with restful sleep. I was not very thrilled about doing a traditional sleep study and sleeping away from the boys so this is kind of a pre-cursor to a sleep study as it will provide enough information to the doc so that he will be able to determine if a traditional sleep study is warranted.

Our RT brought over the Apnea Link yesterday and gave me a quick lesson. It's pretty easy to do. There's a small unit that gathers the info which you can wear on a belt around your middle. Then there's a nasal cannula attached that you wear and an oxygen sensor that you place on your finger. Turn the unit on and sleep! It was mildly uncomfortable. I think it will give a pretty good picture of my sleep patterns--better than if I was in the sleep 'lab'. We'll see.

No April Fools here

I guess we kind of forgot that today was April Fool's Day. Oh dear! Casey usually likes to play tricks on people and we didn't plan a thing! Brooke said she was a little nervous thinking we might play a trick on her during the night, but we didn't! Next year will be double trouble!

Casey got off to school with Julie. We were supposed to get a bad messy storm but when I woke up there was nothing on the ground and it wasn't precipitating at all. Eventually it did snow/rain but nothing big--the warning was cancelled.

Colin has slept in HARD these past two mornings! He's not used to being out late at night like we did on Wednesday. He had a good school day. At break time Lauren did his nails with sparkly blue nail polish. Sigh. She had promised him, so she did it. We thought he was over his blue nail obsession but apparently not. He got nice and messy during art. They're doing paper machee.

Casey had another good day at school. Julie actually commented that he is growing up so fast. All of a sudden I think he *gets* it and is acting more responsible and controlling his voice and acting mature. He watched a movie in bed for a while and then Nancy H messaged me and reminded me about the Red Sox opener and I mentioned it to Casey and he wanted to get up and watch. So he watched the game in the yellow room while Colin watched Magilla Gorilla in the living room. I had to do lots of running back and forth (by this time the nurses were gone and Gene wasn't home yet) but they were cooperative for me. Casey had his DynaVox and opened his e-book reader and multitask-ed by watching the game AND listening to a book about the Harlem Globetrotters.

Gene came home and we had huge burgers, fries and cole slaw with his famous slaw sauce.

Bedtime was pretty late. We read about 3 chapters in SuperFudge--both boys kept agreeing that they wanted more.

Our night seeing the Harlem Globetrotters!

All in all we had a great time. Colin wants to go again next year for his birthday, so we probably will but I won't do the Magic Passes again. It was good to be able to get into the venue early and hang out and watch the crowd come in but the half hour "Magic Pass" wasn't that thrilling for our guys.

Happy Birthday to Bob, in Heaven

I'm writing this post several days after my brother's birthday but I'm posting it on his true birthday...

This is Bobby's second birthday in Heaven. The first was truly hard and so was this birthday, but it was a little less intense, I guess I'd say. I truly think the day he was shot, and the day he died, will be harder days for me to deal with.

Gene bought a new American flag to fly in honor of Bobby on his birthday. Last year Dad had suggested that we fly an American flag in honor of his birthday as he was a (ex)marine and had dedicated his life to law enforcement. This year Gene decided that the flag was in too sad of a shape to fly so he bought a new one. He put it up early in the morning in Bobby's honor.

Again, this year, I spent some time upstairs alone in bed and ate chocolate marshmallow eggs. This year I ate ONLY 8 instead of last year's 9! I never knew what to do for Bobby's birthday so I'd traditionally send him a carton of marshmallow eggs since his birthday always coincided with the Easter season and they were readily available and he loved chocolate marshmallow. One year I send him TWO cartons and he said to me on the phone, "What are you trying to do, make me fat?" Ha! He's never been fat or out of shape--ever!

Again, this year, I made a chocolate pudding graham cracker pie which was one of Bobby's favorites. Chris came over in the afternoon and we had dinner and silently enjoyed some chocolate pudding pie.

Our Earth Hour

Nancy H, and Gene looked at me like I was crazy when I said we were going to observe Earth Hour while Casey was in the tubby and then had to get a trach change. But, we did it (turned on the light for the trach changing part :-) ) We founds some oil lamps and little kid lanterns and turned off the lights. Casey was already in the tub and thought it was quite funny! Nancy wasn't too thrilled to be reading books to Casey by lantern light but they muddled through. Colin and I got ready for bed via oil lamp. He thought it was kind of thrilling--which is good, because he usually freaks out when it's too dark.

It's kind of wild how much light there is in our house even with the lights off. So many electronics are always glowing! The clock on the microwave, the clock on the stove, the VCR, lots of lights on the boys equipment, oh, and there's even a glowing light on the blender!

This morning both boys got new g-tubes. So far, Colin's hasn't leaked at all. I hope this change will stop the problem. I really don't feel like seeing GI.

Casey also got his trach change.

No nurse so I snuggled down on the mattress in the wish room and finished The Hunger Games. I'm still amazed that anyone would even THINK of such a scenario to write about. I guess it's a science fiction book and I don't usually read science fiction so maybe I'm missing out on some intriguing plots. I want to read the rest of the trilogy but I'm afraid that they won't be as good as the initial book. But I've got to see...

A Friday

I was kind of restless today. Got a little bit done, but not much.

Casey had a most excellent day today! I guess after yesterday he decided to turn himself around. Good job, Casey!

Colin was pretty good. He's not really 'getting' fractions, but that's okay :) He had a hysterically fun time starting to make a paper mache puppet with Priscilla during art today.

During his break, we made a little video for the cutest little girl celebrating her first birthday.

Casey home early

Gene picked up Casey today because Nancy thought he was acting 'off'. He kept his eyes closed and his face all crinkled up and wouldn't answer anyone. His sats and heartrate were fine. He had a lot of junk this morning and she got more out at school but he is clear now. I think he's just mad because Mel was out and he had a facilitator he doesn't really know and Mr. Wyndorff was out, too. Plus, I think he's still giving poor Nancy a hard time because she was away for a couple of weeks. He's home and snuggled in bed right now listening to an old Gospelfest CD and completely content.

Robbie Rosen raised awareness for SMA

Check out this story about Robbie Rosen (top 24 American Idol Contender 2001)!!! Raising awareness for SMA! Way to go, Robbie!!

Here's a link to Robbie's song for Sophia, "Make it Through"

We flunked

We found out yesterday that they are denying us a rescue Rottie. I am so bummed. Gene is taking it better than me. We are not giving up, that's for sure. I guess they are worried about the dog and the boys. I won't say anymore because I don't want to get started. Sigh.

Happy 1st full day of spring---NOT!!! It snowed!

Yes. It snowed. Not tons but it was totally swirling around and it stuck to the trees and the grass. I just heard that the roads are bad tonight--but more slippery due to icy conditions.

I woke up with a head banger today. I think it was the stupid change in weather. 600 mg of ibuprofen hardly touched it.

Linda was here today for Colin and will be tomorrow. He kind of gave her a hard time about listening and doing work. I think he lost two Scooby snacks this morning.

Casey had a good day at school. He's been getting a lot better about being quiet in the hallways when classes are going on.

Not much was accomplished today. Some phone calls, a little paper work, laundry. Shoot, just realized I forgot to place our DME order.

Paul dropped Casey's new SAT monitor off this afternoon and I turned in the loaner.

Whooeee, so exciting!

OH, WAIT!

The best part about today was when Casey and Colin had a little spat! So funny! Colin doesn't always like it when Casey comes in the living room to watch TV because he can be too noisy and it makes him mad. Julie wheeled Casey in and Colin was perturbed so he said, "Bye Casey!" (sounds like bii aseee) over and over again so Casey responded with his DynaVox, "Colin, bye, bye". They went back and forth for quite a while until AC came and she and Casey went out into the other room to watch football.

Our Belated St. Patty's Day

Today was our day for our boiled dinner. We had corned beef, cabbage, potatoes and carrots simmered perfectly by Gene, spotted dick (Irish soda bread with raisins :-) ), and Grandma made Watergate salad (pistachio pudding, crushed pineapple, mini marshmallows and Cool Whip). In the past, Grandpa O has said my Irish soda bread was as good as his grandma's (or some old relative)! This year I put two pieces on his plate. He didn't comment, so I said, "Well" and he said, "It's okay." Wahhhh! Disappointment. I thought it was pretty good! I had to goad him into eating his second piece!

I never put up our St. Patty's Day decorations but I had kept some napkins out so I set the table with the green linen tablecloth, special napkins and my Princess House Candle Lamp with green water so it looked festive despite.

Casey enjoyed watching a couple of different basketball games with Grandpa. They also watched some Gospel after dinner.

Colin was absorbed in watching Teen Wolf and The Indian in the Cupboard--he didn't say much :)

AC didn't come over. She is still recuperating from a full week at school again.

This morning the boys slept and slept. CASEY actually woke up earlier than Colin! He was content to just hang out and doze until Colin got up and we stuck in a movie.

The first full day of Spring is tomorrow. It was sunny and sparkling out but still pretty cold. Gene made a fire to take the chill off and so the furnace wouldn't keep running. We're supposed to get some snow tonight---Hellllloooo winter! You can stop any time now!

Did we pass????

Today was spent waiting for the 'dog lady' to come. She is from the North East Rottweiler Rescue . We are actually working with For the Love of Dogs but they share a lot of info and help each other out. This woman is from the next town over so she did our home visit. We had no nurse, but the appointment was at 3:00 so we had plenty of time to tidy up and get the boys ready. We had Casey up in his chair but Colin wanted to watch his cartoons so he was on his spot in the living room.

I guess it went okay. There were a few questions that Gene answered and I wanted to kick him but I don't think they will deter us from adopting. She looked around and talked a bit about traits that we'd like/not like, some training issues, how we'd exercise her, etc. She stayed for a good half an hour and then checked out the yard and the partial fencing we have. I hope the yard isn't a deterrent because there's a lot of crap out there (Gene's crap) and everything looks pretty miserable with all the mud/debris and snow. So, she'll send her info to our organization and we hope to hear from them soon!

Oh, and she did recognize that the boys are 'complicated' and mentioned that if it were her organization she would probably bring the dog to us, here, instead of having us go to them. I would LOVE that because I'd really like to see how the dog may react to the medical equipment and the wheel chairs and the boys. So, we'll see!

St. Patty's Day

I managed to snap a few photos of Casey before he left for school today...he was in his fleece already but it didn't really matter since he didn't have a green shirt on! I can't believe that Casey has no green long sleeved shirts! I think last year he wore his blue Irish sweatshirt with the four leaf clovers...but it's kind of getting small for him. Anyway, he still looked cute as he had on a mardi grass bead type green 4-leaf-clover necklace, his plaid green cap and a green earring. At some point during the night he lost his earring so I found my original starter earring from way back in early 90s when I got one of my ears double pierced.

Colin, well, he looked cute with his green shirt and beads but, apparently, some kind of mess was made and he didn't stay in that shirt very long!

I had my appointment at 9 and then Gene and I had a Casey team meeting at school. We talked some about school and some about Boston. The Boston plans are starting to firm up--transportation for Casey when needed, the suite at Emerson, Paula coming as his facilitator, etc. BUT, it looks like it may be only a ONE night trip instead of the planned TWO nights. The fund-raising is going pretty slowly and they need to make lots more money to be able to afford the two nights. WHICH means that the whale watch is not on tap for everyone. The team is quite willing to have us go on our own so we will do that. There is no way we can disappoint Casey after all this talk of going on a whale watch; it's just about all he wants to talk about. Now we just have to hope for good weather on that Friday morning!

We brought Gene and Casey home after the meeting as Julie had another commitment. So we just hung out and didn't do much.

No corned beef dinner for us tonight. :( We just never seemed to get ourselves together to buy the stuff and plan the meal. We'll have the O'Neills over on the weekend to celebrate our St. Patty's Day.

8th grade

Here I am in 8th grade. Casey has been very good and especially quiet. Not sure what is up with that! (but that's okay with us!). So far I've read a couple of chapters of The Hunger Games. What a stressful read it's going to be! I'm also playing with Mr. Scott's iPad.

Casey survives Nana L and P is back

Casey was a little apprehensive about going to school with Nana L, but I guess they did fine :) Gene thought that maybe she should bring a pulse ox (Casey has a portable finger tip one available at all times but the regular nurses rarely use it) but she thought they'd be fine with the portable one...Poor Nana usually does Colin so her Casey skills are rusty. But, they were fine. He had a pretty good day, although Mel cut him some slack (a very little slack is what I heard from Nana) since he hadn't been in school for a while and because he had a 'sub' for a nurse.

I get to go with him tomorrow! I've been to school and have seen him on special occasions but haven't really spent a lot of time with him at school since he was just a little kid! We're only going to stay for his morning core classes, but it will be fun to see all the kids and how they interact.

Colin was glad to see Priscilla again. She was out for a week! She's still wearing a mask but seems pretty much back to normal.

I guess I was a pretty good nursey. I think there were a couple of times that I kind of 'forgot' that I was on duty, but all went well. We got Colin up in his belly brace and chair for music but he wasn't comfy so we ended up reclining him. He still was able to play the recorder and enjoyed himself.

One of those days

Today won't go down in history for being one of our favorites. Nothing bad happened, but the boys were very needy and Gene and I weren't feeling our best. I don't think there was five minutes that I didn't have to fix an 'ow', shut off a SAT monitor beep, take care of a feeding pump beep, take a phone call, etc. This may be TMI but I didn't even get to um, pee, without a feeding pump beeping. Gene and I both got pretty grumpy.

I have no clue as to what to do with Colin. He has been complaining about his back hurting very often, and I mean VERY often. I'm pretty convinced that it's a real pain although sometimes I think that he's just wanting to move and/or get attention. He uses a memory foam mattress most of the time, but when he's in the living room he is just on a plain crib mattress. I don't think X-rays will show anything but we are due to get them done and see Dr. A (ortho) this spring, I believe. I know lots of older kids have issues with pain in the back and hips, etc., so I guess I'll be picking some brains. He gets Ibuprofen every night and that seems to help relax him to go to sleep. I've been giving him Tylenol every down and then for his back pain and I don't even know if it lessens his uncomfortableness. Last night we put the seat vibrator under him and he loved it! Used it again today and he liked it but still had lots of ows. I also used some Burt's Bees muscle cream on his back and rubbed and rubbed and that seemed to help. Sigh. I just wish I knew for sure what it was and how to help him!